Good early morning,
It is barely 4:00 a.m. And I have been awake a bit more than an hour. In the past couple of weeks I have been in bed more times than I can remember before 8:30 at night. It does mean that I wake up earlier than I might wish, but that is perhaps the schedule I need to adopt. What I am realizing – and I should note that I started this before a birthday this weekend – that I am slowing down. I am not sure I like that reality, but it is a reality that I must come to terms with. I think it started long before the last few weeks or even months, but I have tried to fight it, with little success. I am told I do not look my age, and I am sure that more will contend that I have never acted my age. That is probably more true and sometimes more of a detriment than I might care to admit. I think that has always been an issue for me. I am not sure the reason for that, though I do have theories.
This past seven years, I have fought with health things that are a consequence of the Crohn’s and those things have take their toll on me more than I would like to admit. The main consequence of Crohn’s for me has been an issue of hydration. I was battling this long before drugs like Humira or Remicade were available, so I did the 5AZA treatment of corticosteroids, sulfasalazine, and in large dosages. This began thirty years ago. It is hard to believe it has been that long since the first surgery. I had fought it for two years before that and now I know that I was probably born with it. Now it is 9 major surgeries later and more same day procedures that I can even count. In spite of all of that I have seemed to manage, certainly with ups and downs, but I have been able to hold onto my jobs and, in spite of other complications, it seems like my body figures out how to compensate and I keep plugging along. What I am trying to figure out is whether or not I am slowing down because of the cumulative effective of all of this or is it merely I am honestly aging. I certainly do not like to admit the aging part for the most part, but then again, I am blessed to have made it this far, particularly when I consider the rocky beginning that characterized my infancy. I have to admit this morning as I was working on all the things I must do to manage the consequences of 9 surgeries, I wondered what it would be like to have a normal body once again. I wondered if the infamous genie did exist and told me I could have one wish, I think the wish would be to have a complete body and all my insides on my inside again. I cannot even remember what it was like to not have pain or have to manage the difference that that first surgery (which was actually the second and third) when I was the pastor in Leighton and traveled all the way to Arizona. I remember the consequences of that surgery and how it affected me and how my wife at the time reacted. As I have noted before, one of my friends (an astute English scholar) noted, I have gone from a colon, to a semi-colon, to a run-on sentence to a fragment. I still struggle to understand the why, but what I do know is that even now, I must be attentive to many things most people take for granted: water intake, salt intake, digestion, portions, to name a few. There are theories as to why someone contracts the various forms of an IBD. It is certainly an issue of a malfunctioning immune system; in addition, it is also more likely to strike someone who had a premature birth. It seems I cover both of those categories.
The consequence of the last twenty-five years has been difficult. What are the results for my identity? It affects my feelings toward my body because I am no longer whole, literally and figuratively. In the course of the 25+ years I have had extreme pain, unbelievable weight loss, and trips in and out of hospitals to the point that surgery is no big deal. I merely see it as another speed bump to manage. Through the years of prednisone, sulfur-based antibiotics, twice daily enemas, and every imaginable test possible to my altered GI tract, I have felt like the guinea pig or the specimen under the microscope; I have been both held up as a poster child for managing the disease through serious complications and told by an ex-spouse that she was tired of being married to a wimp. More often than not, I tried to hide my malady, afraid to speak out about it because I was ashamed and embarrassed. Somehow it did not seem “man-ly” to have to run to the bathroom or let someone know that I had a “bag on my side.” Indeed, when I stand in the mirror or the shower, this appliance is there to remind me of my limitations; it is there as a reminder that I will never be physically or functionally “normal”. We are not supposed to talk about things like this in polite company, but it has so affected my identity. It is interesting that I had hid this more than I could imagine most of the time. What I have realized is that through my hiding of myself, I have lost myself; I have eluded language, the very thing I study, to ignore my body. As Martin Buber once said, “the body does not use speech, yet it begets it” (qtd Frank 1995). Yet, most often personal narratives and stories are used to recover from illness, what happens in cases where there is no recovery? What happens when the illness steals me from myself? Who am I then? How can I get myself back? These are questions pondered in the consideration of this paper. What has occurred on some level is the dysregulation between the private and the public self; perhaps not all that different from a mental illness, trying to understand what is appropriate to share, and thereby, creating a more accurate self portrait is a constant struggle (Wisdom et al, 2008). Again, much like those who suffer mental illness, there is a dichotomous process in what I reveal to most and what I know as a constant companion. As someone who had the ileostomy twice as a temporary escort, those experiences prepared me for the permanency which occurred in October of 1997. Yet, if I had an opportunity to change that because of some medical breakthrough, I would be at the front of the line. Even as the words are written, I find it hard to imagine what life would be like without the ileostomy.
It astounds me as I write to realize how much of my life is controlled by this 4×4 wafer and 10” pouch. The struggle to be seen as more than someone with a serious illness confronts me emotionally more than most know. Another former grad school colleague once told me, “Michael, for everything you have been through, you should look like roadkill.” She smiled, and I merely said, “Thanks, Leslie; I think that’s a compliment.” Ironically it is the telling of the stories that some of the damage both emotionally and physically is repaired. It is in the telling of the stories of where one has been that they might begin to see the possibilities of where they might go (Frank 1995). Yet our society view of intestines or any other issue that has to do with our intestinal function has been required to remain behind closed doors. We can talk about cancer and all sorts of other personal things, but it seems that even yet whenever I bring up my diagnosis and life-long struggle with Crohn’s, invariably, there is someone in the room that knows someone or there is someone in the room who is struggling with this. What will it take for it to be less than being immodest or inappropriate? What will it take for it to be something more than spoken of in hushed voices. How will it be that I can ever see my own self as a complete person? I guess I have reasons to believe that I have slowed down, but more importantly, I have not quit. It is perhaps in telling this story here more completely that again I can fight this menace more confidently that it seems I have lately. People respond to our stories, through the stories we tell or illustrate, we begin to understand ourselves; we create an identity, and others begin to identify us. Those stories do not simply describe the self, they become the self. It is necessary for us to tell stories and understand the implications of the stories if we are to begin to repair what wreckage the illness has caused (Frank 1995). Illness can create a lack of agency for us as human beings. During the times my Crohns was particularly active, my life felt out of control; it was structured by the regiment of medication and the frequent trips to the bathroom. Looking back, I was living this wreckage of which Frank speaks. There was no alignment; there was no story because much like a person who is mentally ill, I merely existed. If I were to try to tell the story then, I am not sure there would have been coherence. I am able to tell it now because it is a distant memory; instead of being embarrassed, or angry, the very writing of this has helped me come to terms with my altered state. As a person with a PhD in Rhetoric and Technical Communication, I understand the power of words. We use words to persuade and identify; we use words to understand and make sense of our lives and our experiences. So why is it that for 23 or 24 years of my illness I worked as hard as I could to hide my disease, coming out, only when it was safe or required, or when it was to my advantage? Perhaps because I had not or could not manage the chaos this disease has created. Perhaps because I could not get those experiences of rejection by those from whom I most needed acceptance in my altered state; I reasoned if the people who supposedly loved me and knew me the best could not accept me, how could others?
Indeed, the wound of rejection was much more difficult to heal than any incision. As I look back, it was Dennis Clark, the professor from Arizona State who first visited me, that showed me I could be more than a person who was afflicted; it was the nursing students who I lectured in one of my previous teaching positions and their genuine and thoughtful questions, who helped me understand that I was more than an appliance; it is in the beginning of telling that I become connected to the past, but moving toward the quest for a future; as a former Lutheran pastor, and of Northern European descent, the role of testimony is not as established as in some other religious traditions, but the role of testimony is significant; it allows for a pedagogy of suffering as Frank calls it. This is not an opportunity to wallow in the sadness of my fate, but rather deals with the reality of my life in an honest and forthright way. It is the beginning of a new narrative of restitution (Carless), a narrative that replaces the narrative of chaos or the narrative of pain and rejection. Perhaps it is time to slow down and pay closer attention to my body, but that is difficult for me because I feel like I am not doing my other jobs as well or as completely as I should. The consequence of this slowing down, or refusing as it might be, has also had consequences. Some things have gotten completed and for that I am happy. Other things, not so much, and for those things I feel more like a failure than people might know. One of the things I heard from a high school friend over the weekend was that I always had a smile on my face. It is amazing to know that because there was such difficulty in my household. I think it was that I was happy to be out of that chaos and stress. I was happy to be where I felt valued and cared for. Over the weekend I spend significant time responding to all the people who were kind enough to remember my birthday. I also slept more than I regularly do. Two people for whom I have a lot of respect and trust pushed me again on slowing down. While I hate to admit it, I am afraid I must do so. Perhaps I can get other things done finally and with less stress. I have never been one to quit or give up, and slowing down seems to be quitting or giving up, but perhaps I need to rethink that.
As always, I am grateful that you read this. I know that the last blog had almost two hundred views in a day. That amazed me. I merely try to get myself and others to think.